Tropical Medicine and International Health doi:10.1111/tmi.

13017

volume 23 no 2 pp 199–205 february 2018

Status of tuberculosis-related stigma and associated factors: a

cross-sectional study in central China
Xiaoxv Yin1,*, Shijiao Yan2,*, Yeqing Tong3, Xin Peng4, Tingting Yang1, Zuxun Lu1 and Yanhong Gong1
1 School of Public Health, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China
2 School of International Education, Hainan Medical University, Haikou, China
3 Center for Disease Control and Prevention, Wuhan, China
4 Cancer Center, Union Hospital, Huazhong University of Science and Technology, Wuhan, China

Abstract objectives Tuberculosis (TB) poses a significant challenge to public health worldwide. Stigma is a
major obstacle to TB control by leading to delay in diagnosis and treatment non-adherence. This
study aimed to evaluate the status of TB-related stigma and its associated factors among TB patients
in China.
methods Cross-sectional survey. Thus, 1342 TB patients were recruited from TB dispensaries in
three counties in Hubei Province using a multistage sampling method and surveyed using a structured
anonymous questionnaire including validated scales to measure TB-related stigma. A generalised
linear regression model was used to identify the factors associated with TB-related stigma.
results The average score on the TB-related Stigma Scale was 9.33 (SD = 4.25). Generalised linear
regression analysis revealed that knowledge about TB (ß = 0.18, P = 0.0025), family function
(ß = 0.29, P < 0.0001) and doctor–patient communication (ß = 0.32, P = 0.0005) were negatively
associated with TB-related stigma.
conclusions TB-related stigma was high among TB patients in China. Interventions concentrating
on reducing TB patients’ stigma in China should focus on improving patients’ family function and
patients’ knowledge about TB.

keywords tuberculosis, stigma, risk factors, China, cross-sectional survey

risk of TB transmission and the development of mul-

Introduction
tidrug resistant TB.
Tuberculosis (TB) has become one of the major public TB-related stigma constitutes one of the major social
health problems worldwide. According to WHO, in factors causing delayed diagnosis [4] and treatment non-
2015, there were more than 10 million new TB cases, 1.4 adherence [5] among TB patients. A large number of TB
million people died from TB and another 0.4 million patients have admitted that they fear isolation or rejec-
deaths resulted from TB among people living with HIV tion due to TB; for instance, they are afraid of losing
worldwide [1]. Among the 30 countries with the highest their jobs, having fewer education opportunities and
TB burden in 2015, China ranked third and accounted being forbidden from sharing meals, utensils or sleeping
for about 9% of cases worldwide [1]. space with family members [6–8]. These fears lead many
Directly observed therapy, short-course (DOTS), which TB patients to hide their symptoms, delay seeking care,
was recommended by WHO in 1992, is still the primary conceal their disease and not comply with treatment [7].
measure for TB control with a treatment success rate of Recently, several studies have been conducted to iden-
more than 90% for new TB cases. The effectiveness of tify factors associated with stigma among TB patients in
the DOTS strategy greatly depends on the detection and different countries. Sociodemographic factors such as age,
treatment of all suspected TB cases [2]. Unfortunately, gender, education, religion, lack of TB knowledge and
only 47% of patients with TB symptoms sought health social support [8–13] were reported to have a significant
care in time, and 59% complied with the treatment plan association with TB-related stigma. However, few studies
in China in 2011 [3], which may cause an increase in the have examined TB-related stigma and its associated fac-
tors among TB patients in China. Considering that the
factors associated with TB-related stigma may differ due
*Joint first authors.

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X. Yin et al. Status and associated factors of tuberculosis-related stigma

to variation in sociocultural elements, ethnicity and gender, age, education, marital status, religious beliefs
region [14], further studies are needed to explore the fac- and history of prior TB treatment.
tors related to TB-related stigma in China. Therefore, we TB-related stigma was measured using the TB-related
conducted a cross-sectional study to explore the status of Stigma Scale, which was developed by our colleagues
TB-related stigma and identify its associated factors according to the standard method for the development
among TB patients in China, which we expect may be and validation of new scales and has shown excellent
helpful in improving the intervention strategies of TB validity and good internal consistency (Cronbach’s
control programmes. a = 0.88). Full details of the development and evaluation
of this scale can be found in our previous publication
[15]. The scale consists of nine items (Table 1). Each
Methods item is scored on a 4-point Likert scale, ranging from
‘strongly disagree’ to ‘strongly agree’ coded with values
Ethics
from 0 to 3. The total score is computed as the sum of
This study was performed in accordance with the princi- all items to provide the stigma score, ranging from 0 to
ples of the Declaration of Helsinki and approved by the 27, with higher scores indicating higher levels of TB-
ethics committee of Huazhong University of Science and related stigma. The nine items in the scale measure TB
Technology, Wuhan, China. Participant was voluntary, patients’ stigma in three dimensions: negative experience
and all participants gave written informed consent before (items 4, 5, 6 and 7), emotional reactions (items 1 and 3)
being involved in the study. All identity details of study and coping style (items 2, 8 and 9).
participants were kept confidential. Patients’ knowledge about TB was assessed by six mul-
tiple-choice questions: (i) aetiology of TB, (ii) route of
transmission of TB, (iii) whether TB is curable or not,
Participants and sampling
(iv) duration of the standardised treatment regimen for
This cross-sectional survey was carried out from 1 Octo- TB, (v) common clinical symptoms of TB and (vi)
ber 2013 to 31 March 2014, in Hubei Province in central unhealthy behaviours that make TB spread easily. Of the
China. Participants were sampled using multistage sam- six questions, the first four have a single correct answer,
pling. First, counties across Hubei Province were divided and the patient receives 1 point for each correct answer;
into three categories according to their economic develop- the remaining two questions have four correct answers,
ment status—upper, middle and lower layers—and a and the patient receives 0.5 point for each correct choice.
county was randomly selected from each category. Sec- A question is scored with 0 points if the answer is incor-
ond, all TB patients who visited the county TB dispen- rect or ‘I do not know’. Thus, in total, the score of TB
saries at the study sites during the study period were knowledge ranges between a minimum of 0 and a maxi-
recruited. The participants were individuals meeting the mum of 8. The higher the TB knowledge score, the more
following criteria: diagnosis of TB according to national TB knowledge a patient has. The questions used to assess
TB programme guidelines; absence of psychosis; and patients’ knowledge about TB came mostly from the
willingness to participate in the study. Thus, 1430 questionnaire used in the National Tuberculosis Epidemi-
participants were enrolled and completed a structured ological Survey of China [3].
self-administered anonymous questionnaire during the Patients’ family function was assessed using the family
study period. APGAR index developed by Smilkstein in 1987 [16]. It
includes five questions that allow the measurement of sat-
isfaction with social support received from family mem-
Measurements
bers in relation to five domains: adaptability, partnership,
Data were collected using a standard structured anony- growth, affection and resolve. Each question is answered
mous questionnaire administered by trained medical per- using a 3-point Likert scale ranging from 2 to 0
sonnel. The questionnaire was developed based on a (2 = often; 1 = sometimes; and 0 = scarcely). The total
review of the previous literature and pre-tested in a pilot score is the sum of the scores of all five questions and
study with 25 TB patients to ensure that the questions ranges from 0 to 10. The family APGAR index has been
were clear and understandable to all participants. The widely used in China with good reliability and validity
items of the questionnaire covered five sections: sociode- [17]. In our study, the family APGAR index demon-
mographic characteristics, TB-related stigma, knowledge strated high internal consistency (Cronbach’s a = 0.86).
about TB, family function and doctor–patient communi- Doctor–patient communication was measured using four
cation. The sociodemographic characteristics comprised questions: (i) satisfaction with the doctors’ service attitude,

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X. Yin et al. Status and associated factors of tuberculosis-related stigma

Table 1 TB-related Stigma Scale

Instructions: Below is a list of the ways you might have felt or behaved. Please tell me how much you feel this way
since you have tuberculosis

Strongly Strongly
disagree Disagree Agree agree Mean  SD

1. I feel ashamed of myself for having tuberculosis 0.90  0.66

2. I am unwilling to reveal my tuberculosis 1.32  0.76
to my friends or neighbours
3. I think less of myself for having tuberculosis 0.95  0.62
4. I feel that my family members look down 0.90  0.62
on me for having tuberculosis
5. I feel that my friends or neighbours look down 1.03  0.66
on me for having tuberculosis
6. I feel that my friends or neighbours look down 0.97  0.63
on my family because I have tuberculosis
7. I feel that my friends or neighbours avoid me on purpose 1.05  0.66
8. I avoid keeping in touch with my friends or 1.26  0.76
neighbours since I have tuberculosis
9. I am afraid of going to TB clinics because 0.96  0.66
other people may see me there

(ii) extent to which the doctor introduces the illness, (iii) were included in the analysis. Participant characteristics
extent to which the doctor explains the details of taking and their association with TB-related stigma are pre-
anti-TB agents and (iv) extent to which the doctor explains sented in Table 2. The study participants had a mean
adverse drug reactions to anti-TB agents. Patients were age of 47.72 (SD = 17.06) years, and more than three-
asked to rate their answers on a satisfaction or detail scale fifths (61.29%) were 45 or older. Almost two-thirds of
ranging from 1 to 3 for the above four questions. The total participants (67.44%) were male, and 12.52% had a
score ranged from 4 to 12, with higher scores meaning bet- history of prior TB treatment. The mean score of TB-
ter doctor–patient communication. related stigma was 9.33 (SD = 4.25), and the average
item score was 1.04. Patients who had less education,
who were married and who had a history of prior TB
Statistical analysis
treatment had higher TB-related stigma scores. Table 3
All statistical procedures were performed using the Statis- presents the participants’ knowledge about TB, family
tical Analysis System (SAS) 9.4 for Windows (SAS Insti- function and doctor–patient communication status and
tute Inc., Cary, NC, USA). Descriptive analyses included their association with TB-related stigma. The average
means for continuous variables and percentages for cate- scores of knowledge about TB, family APGAR index
gorical data. T tests and analyses of variance were con- and doctor–patient communication were 4.86
ducted to compare TB-related stigma scores between (SD = 2.02), 7.57 (SD = 2.39) and 11.33 (SD = 1.25),
groups. Pearson’s and Spearman’s correlation analyses respectively. Correlation analysis indicated that patients’
were used to analyse the relationships among patients’ knowledge about TB, family function and doctor–patient
knowledge about TB, family function, doctor–patient communication were negatively associated with TB-
communication and TB-related stigma score. A gener- related stigma.
alised linear regression model was used to examine the Table 4 presents the results of the generalised linear
association of the independent variables with the patients’ regression model. Controlling for confounding variables
TB-related stigma scores. All comparisons were two- including age, gender, educational level, marital status,
tailed. The significance threshold was P value < 0.05. religion and history of prior TB treatment, higher TB-
related stigma scores were significantly associated with
less knowledge about TB (ß = 0.18, P = 0.0025), lower
Results
family APGAR scores (ß = 0.29, P < 0.0001) and
Of 1430 questionnaires collected, 88 (6.1%) were dis- poorer doctor–patient communication (ß = 0.32,
carded due to missing data. Thus, 1342 TB patients P = 0.0005).

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X. Yin et al. Status and associated factors of tuberculosis-related stigma

Table 2 Participants’ characteristics and their associations with Table 4 Multivariate linear regression analysis of factors associ-
TB-related stigma ated with TB-related stigma

TB-related Variable Estimate SE t value P-value

All subjects stigma
Constant 15.47 1.26 12.32 <0.0001
Variables n % mean SD P-value Age 0.01 0.01 1.42 0.1572
Gender (Ref: male)
Total 1342 100 9.33 4.25 Female 0.16 0.25 0.67 0.5030
Age 0.0581 Educational level (Ref: primary or less)
11~29 283 21.31 8.82 4.70 Secondary 0.08 0.28 0.30 0.7656
30~44 231 17.39 9.18 3.98 High school or above 0.36 0.40 0.89 0.3751
45~59 440 33.13 9.40 3.98 Marital status (Ref: Single)
60+ 374 28.16 9.71 4.35 Separated/ 0.42 0.68 0.62 0.5345
Gender 0.8851 divorced/widowed
Male 905 67.44 9.34 4.30 Married 0.20 0.35 0.57 0.5714
Female 437 32.56 9.31 4.16 Religion (Ref: none)
Education 0.0158 Yes 0.18 0.37 0.47 0.6362
Primary or less 574 42.77 9.61 4.22 History of prior anti-TB treatment (Ref: no)
Secondary 540 40.24 9.32 4.29 Yes 0.61 0.35 1.73 0.0836
High school or 228 16.99 8.65 4.19 Knowledge about TB 0.18 0.06 3.02 0.0025
higher (above) Family APGAR index 0.29 0.05 5.83 <0.0001
Marital status 0.0469 Doctor–patient 0.32 0.09 3.46 0.0005
Single 224 17.11 9.07 4.53 communication
Separated/ 55 4.20 10.65 3.95
divorced/widowed
Married 1030 78.69 9.33 4.23
Religion 0.1247 TB-related stigma among TB patients in China. We found
No 1152 88.89 9.31 4.24 four previous studies that focused on developing a scale
Yes 144 11.11 9.88 3.76 to assess TB-related stigma among TB patients [18–21],
History of prior 0.0145
but they evaluated only the reliability of the newly devel-
anti-TB treatment
No 1174 87.48 9.23 4.19 oped scales and did not assess their validity. Due to the
Yes 168 12.52 10.08 4.62 diversity in the measurement and scoring methods of TB-
related stigma, it is difficult to compare the results of dif-
ferent studies. However, of the four studies identified,
one used an identical scoring method to ours and showed
Table 3 Patients’ knowledge about TB, family function and that the average item scores of TB-related stigma were
doctor–patient communication 1.17 in India, 1.03 in Colombia, 0.99 in Bangladesh and
0.85 in Malawi [18]. In our study, the average item score
Correlation with
TB-related stigma was 1.04, which indicates that TB-related stigma among
Chinese TB patients is relatively high.
Correlation Linear regression analysis revealed that TB-related
Variables Mean  SD coefficients P-value stigma was not associated with TB patients’ sociodemo-
Knowledge about TB 4.86  2.02 0.15* <0.0001 graphic characteristics such as gender, age, educational
Family APGAR index 7.57  2.39 0.20# <0.0001 level, marital status and religion [22, 23]. The associa-
Doctor–patient 11.33  1.25 0.16# <0.0001 tions between TB-related stigma and demographic char-
communication acteristics have been explored in many studies, and the
results are inconsistent. This is possibly due to differences
*Pearson correlation coefficient.
#Spearman correlation coefficient.
in the measurement of stigma. The variation in results
may be partially explained by differences between the
studies in terms of participants’ age, education and loca-
tion. Variation in sociocultural aspects in different coun-
Discussion
tries or regions may also affect the relationship between
To our knowledge, the present study is the first to have sociodemographic characteristics and TB-related stigma.
used the TB-related Stigma Scale, an instrument with Therefore, studies in different countries and regions are
good reliability and validity, to evaluate the status of needed to put forward more satisfying suggestions for TB

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X. Yin et al. Status and associated factors of tuberculosis-related stigma

control programmes in the locations where the studies symptoms and routes of transmission, which makes our
are conducted. results more comprehensive. Our study participants had a
Our study indicated that TB-related stigma was nega- relatively low level of TB knowledge with a mean knowl-
tively associated with patients’ family function, their edge score of only 4.86 of a maximum of 8, suggesting
knowledge about TB and doctor–patient communication. that health education about TB knowledge is insufficient
Few studies have concentrated on the relationship in China.
between family function and TB-related stigma. Most This study has a few limitations that must be noted.
studies have explored the association between social sup- First, we investigated TB patients’ perceived stigma but
port and TB-related stigma and illustrated that good did not examine stigma from the public’s perspective.
social support has a significant effect on alleviating TB Second, study subjects were rural TB patients and may
patients’ stigma [13, 24]. Support from family members not be representative of TB patients from urban areas.
is the most important source of social support, and we Additional research to investigate the TB-related stigma
also confirmed the effect of this type of social support on from the public perspective and evaluate stigma for
reducing TB patients’ stigma. A study in Pakistan showed patients in urban areas is needed.
that family support can alleviate TB-related stigma [25],
which was also consistent with our study. The mean fam-
Conclusion
ily APGAR score of our TB patients (7.57  2.39) was
greater than that of HIV patients (7.10  3.07) in China TB-related stigma was high among TB patients. Good
[26]. However, in comparison with the Chinese general doctor–patient communication, good knowledge about
population, the family APGAR score of TB patients was TB and good family function have a positive effect on
lower. For example, Cheng et al. reported that the family alleviating TB patients’ stigma. In this study, TB patients
APGAR score was 8.08 (SD = 2.18) for 1052 adult resi- knew little about TB, and their family function was
dents aged 15 years and older in Hubei Province [27], somewhat impaired while doctor–patient communication
and Hai et al. showed that the score was 8.00 was relatively good, indicating that interventions aimed
(SD = 0.92) for 834 community-dwelling Chinese indi- at reducing stigma among TB patients should focus on
viduals aged ≥60 years [28]. This illustrates that TB improving patients’ family function and patients’ knowl-
patients’ family function is somewhat impaired, and edge about TB. More specifically, in view of the relatively
improving it would be an effective strategy to combat good doctor–patient communication, the role of doctors
their stigma. in health education should be strengthened to improve
Good doctor–patient communication is also a source of patients’ TB-related knowledge. Meanwhile, doctors
social support. Some studies have suggested that good should encourage the patient to communicate with their
doctor–patient communication can not only improve family members, which may enhance their family func-
patients’ satisfaction with doctors, but also have a positive tion and, ultimately, reduce TB patients’ stigma.
impact on patients’ somatic symptoms such as pain and
on their mental health [29–31]. Our study illustrated once
again the importance of doctor–patient communication in Acknowledgements
alleviating TB patients’ stigma. It should be noted that The authors thank all study participants for their contri-
doctor–patient communication among the study partici- butions. This project was funded by the Health and Fam-
pants and their doctors was fairly good. However, given ily Planning Commission of Hubei Province (No.
its obvious effect on alleviating TB patients’ stigma, the QJX2012-25) and the National Philosophy and Social
important role of doctor–patient communication should Science Foundation of China (No. 15ZDC037). The
not be neglected, especially when it is unsatisfactory. funders had no role in study design, data collection and
The relationship between patients’ knowledge about analysis, decision to publish or preparation of the
their disease and their disease-related stigma has been manuscript.
confirmed for HIV patients [32]. Our study explored the
association between TB patients’ knowledge about TB
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Corresponding Author Yanhong Gong, School of Public Health, Tongji Medical College, Huazhong University of Science and
Technology, Wuhan 430030, China. Tel./fax: +86-27-83692396; E-mail: gongyanhong@hust.edu.cn

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